Car Magnets!!

You know you want one of these rad car magnets.... sturdy high quality vinyl.  $6.00  Check them out here at my etsy shop!  

Alright everyone, ALL US STATES ARE NOW AVAILABLE to buy in bulk of $10.  Use the extra ones to give away to friends, or to sell as a fund raiser for yourself.  If you have support groups, take them to your support groups!  Help spread awareness for Lyme Disease in ALL states!! (Individual magnets are coming very soon.)  Click Here to Look at Them!  And Please Share!

I'm working on adding more things to the shop, including individual state car bumper stickers.  I'm trying to raise money for myself to help pay for the treatments.  These magnets are great for awareness and they stick on the car really well.  I've had one on this car since December, and they've never fallen off (okay once during a REALLY aggressive car wash.)  The one I've had since December hasn't even faded at all either!  Anyways, please share, help me raise some money and get this awesome magnet in return!  Thanks!

What You Don't Know About Tommy Refenes

It's not often a sister can say "my brother saved my life."  But I can.  Not a lot of sisters will boast about their brothers.  But I do.

 Today is my brother's birthday.  A huge number of people have watched Indie Game: The Movie, played Super Meat Boy and enjoyed interviews with Tommy and Edmund.  Tommy comes off, simply said, as kind of an asshole and arrogant.  I think my friend Nicole said it best; Tommy is very intimidating when you first meet him.  He's very sarcastic and brutally honest- a honesty that is not sugar coated and is his very true opinion.  Others perceive it as arrogance, but as Nicole said, once you know Tommy his personality is lovable.  He doesn't say things to win popularity contests, that would be fake and Tommy is completely genuine.

I guess you can say Tommy is like a... junior mint?  Hard on the outside and gooey minty inside?  Fine.  I didn't want to say it, too cliche, but Tommy has a heart of gold.

Tommy and I have always been very close as brother and sister.  Our bond is very untypical and always have been.  I was as much a part of Tommy's video game education through his childhood, I was always beside him watching him play; from Super Mario Brothers and Legend of Zelda to Super Mario Galaxy and The Legend of Zelda: Ocarina of Time.  We spent a lot of time together, we never had typical "brother/sister" fights.  He always protected me and talk about my accomplishments to his friends and vice versa.

Tommy is a very giving person.  Before Super Meat Boy, as a family we always tried to donate presents to needy kids on Christmas, Tommy would say "if I ever get rich I want to buy these kids bikes!" And he did.

Tommy had taken me to a Valve meeting and dinner the Christmas right after the Super Meat Boy release.  (I told Gabe Newell that "I was Tommy's brother" and made a fool of myself.)  That night back in the hotel, Tommy checked his bank account and saw he received his first Super Meat Boy check.  What was the first thing Tommy did?  Without hesitation, he calls our parents who are back in NC and asks them to go to Walmart, get any remaining names off the 'Salvation Army Giving Trees' and to buy them everything they want.  It was 2am back in NC by my parents were more than happy to do it.  They ended up with 4 bikes, tons of clothes, amazing toys, coats, shoes, basically everything above and beyond what the children had asked for.  Our whole family was in tears, we were finally able to do what we had always wanted to do, because of Tommy. Tommy does things every year for children but there are times we do not know because he does not do it for recognition he does it because he loves children to be happy.

The things my brother has done is simply astonishing and I'd like to believe anyone with new found wealth would do the same.  But what sets Tommy apart from any other person with money and heart is what he has done for me.

Tommy has literally saved my life.  I mean it when I say that literally.  If it had not been for him I would currently be, most likely, permanently in a wheelchair or 6 feet under.  Families are suppose to help each other; but there is a point when that help can go breathtakingly over and beyond.

I have a number of very difficult and debilitating diseases; I was infected in 1997, diagnosed in 2008 and began my major fight in 2012.  Between the end of 2008 and the end of 2011 I went through numerous medical tests, surgeries, etc.  The medical expenses kept me back from leaving my parents house and going out to have fun or just even shopping.  My brother wanted me to have a life and surprised me by paying the entire medical accounts off.

Mid 2012, almost exactly a year ago, my health bombed drastically, nose dived straight down to rock bottom. Suddenly I lost my ability to walk and talk.  Minimal treatment would have helped but this was no where near good enough for my brother.

I have not had health insurance in SEVERAL years.  I've been told numerous times that I am "too high risk" making insurance premiums unaffordable. All medical expenses since 2008 have been completely self pay- or rather in a pile of bills several hundred pages thick waiting to be paid.

After several weeks of research with the help of my parents and Tommy I found the nations leading specialist on my diseases.  Despite the extreme cost, there wasn't even a waiver or flicker of "no" in Tommy, he set me up with an appointment as soon as possible.

I was deteriorating quickly, and we, as a family realized the severity of my illnesses. My brother vowed to pay any expense to get me back to 100%, and one year later, he is still holding his promise.

I speak to my doctor monthly, fly 2,600 miles across country every four months to see my doctor, my medication- I have over 15 different oral prescriptions, over 35 supplements, ridiculous amounts of IV bags and medications (today is bag number 266), four separate injectable medications, expensive medical testing, and several medical procedures... Did I include airfare, hotels and rental cars?  Not just for me but for my mom too, and Tommy also flies in to attend my doctors appointments with me.  My parents and I try to pay what we can and Tommy pays ALL the rest.  You know that beautiful Tesla Roadster Tommy has?  With what he has spent on just my medical expenses he could have bought two more of those...

I would simply hope that anyone with money with a family in a situation similar to mine, I'd like to believe they would do the same.  But I've met several families and people where that is just not the case; nor would they continue to help so much for so long.

Last week I had a visit with my doctor, it's been one year since my legs stopped properly working well.  We learned that this treatment will take much longer than expected.  I'm strong, I will get better, but not without Tommy by my side (and I'm not just speaking monetarily.)  He is a major encouragement and inspiration to me.  He does everything and anything to make me happy and feel better during my worst days.  He knows what silly and ridiculous things to say and do just to make me laugh, and since I've lost some memories he reminds me of jokes and memories from our childhood.  (He reminded me the other day of our love of Carl Winslow and his magically "disappearing" stapler trick hidden in his jacket.)  On top of all the medical expenses he spends money, for example, to take me to PAX just so I can get out of the house and do something fun.

So that's Tommy Refenes in a nutshell, the REAL Tommy Refenes.  The charitable loving heart of gold mixed with some annoying-ness, intelligence, and of course some asshole-ness.  He deserves to be recognized for what he does, he deserves for others to know what kind of person he really is.  I can not possibly thank him enough.

I am so proud of him; not just because of the video games but his generous heart and continuing to be the sweet (asshole), loving (jerk), he's always been and will, without a doubt, forever to continue to be.  Thank you Tommy for being the strength that keeps me up and stops me from giving up.

HAPPY BIRTHDAY, TOMMY. . . I LOVE YOU! <3

Personal Battle

This week has been very difficult for me. Earlier this week I went to see my doctor about a crunching noise I've had in my back for as long as I could remember. It isn't popping, it's literally at least 10-15 crunch sounds whenever I straighten my upper back and neck. Expecting only that my posture is bad, and an easy fix I was kind of blown away when the doctor told me I have a minor case of scoliosis. She said instead of my spine being curved, it is twisted at the base of my skull and upper back.

This is a difficult thing for me to swallow.  Especially all the research I did asking other lyme patients and though research papers, that this might actually be Lyme disease twisting and disfiguring my back.

This stress was packed on pretty high with my mom and I. Then yesterday my mom and I let something two incredibly ignorant and insignificant people put us over the edge. Being as upset as we were about the previous days diagnosis of a corkscrewed spine, a simple comment from these lying, trashy, selfish people, one who we have known forever as nothing other than a scamming attention seeker, really upset us both. The stress the situation put on me triggered a migraine worse than I've had in years. The last time I had a migraine of this magnitude, I ended up in the ER 6 years ago. Then I started vomiting. Non-stop, violent for 7 hours straight, until I could finally fall asleep. This morning at 6 am, I was in so much pain I could barely walked. My knees wouldn't move, my hips were frozen, and the pain throughout my body was insane. Luckily, after falling asleep again, I woke up in my normal range on the pain scale, but still am currently a bit nauseous. 

But I've learned a lesson. The reason people like myself get so upset by simple reasons is because we still grasp to care about these people. Even after everything the person who triggered all this stress has put me, and their family, in over the years, all the pain and hurt this person has caused, a couple months ago when this person called me with relationship trouble and needing someone to talk to I did not hesitate to offer this person any possible help I could give them. I am a compassionate person, as is my mom. We bend over backwards for people who never show gratitude, or even an equal amount of love. Lesson learned; those who aren't worth it, we need to accept they aren't worth it. These people will never care, they aren't heartfelt people, and they have very little to no compassion for anyone. Instead of striving to get people to love me who don't, this energy needs to focus on the people who do love me!

Last night I was in so much pain, I actually wished I wouldn't wake up. I truly actually hoped... But today I realize if I would have passed, it would have only been a mistake. I love the people who are there for me, and I couldn't possibly, now, care any less about the people who don't.

Scoliosis and Lyme

For the last several years I've been having issues with my back.  My upper neck and between my shoulders constantly hurts, and when I move my neck there is a bunch of crunching and crackling noises.  I finally went to the doctor today about it.

It turns out that I have a very mild case of scoliosis.  Not the type that my back is curved, but it is actually twisted at the top of my neck.  I'm starting physical therapy soon for it, but of course, it has me thinking a lot.  Is there a connection between Lyme Disease and scoliosis?  Of course there is a possibility that it has absolutely no connection at all with Lyme Disease, but I have this gut feeling that someway, somehow there is a connection in my case.

Recently the study came out that Lyme is the only living organism that lives off manganese rather than iron.  In order for the bacterium to survive in our bodies it consumes manganese.  So, what are consequences of having a low level of manganese in the body?  Here's the list:

• Infertility
• Impaired glucose metabolism
• Diseases of the skeletal structure, and impaired growth
• Pancreatic dysfunction
• Elevated blood pressure
• Atherosclerosis
• Reduced protein metabolism
• Reduced immune function
• Ataxia
• Selenium deficiency
• Depressed activity of mammary glands in nursing mothers
• Mitochondrial abnormalities

Basically, I already have a good majority of these symptoms, and so many fellow Lyme Disease patients share these same problems already.  It is not coincidental that so many of these symptoms parallel Lyme & Co-Infections.

Anyways, scoliosis can be caused by nutritional imbalances; such as a lack of manganese.

In conclusion, I am not a doctor, the most medical training I've had is through mortuary college, but I highly believe the evidence is monumental that Lyme Disease can cause scoliosis and other injuries and deformities with bones.  I do NOT believe that everyone with back problems have Lyme Disease though, just wanted to throw that one out there.

Also, another point my doctor made was that having so much pain which is caused by Lyme, your body will contort unconsciously to help cover the pain, which can cause deformities in the spine, and pain.

I'm going to continue doing research.  Of course none of this may not make sense to anyone because I have Lyme brain, but hey, it all makes sense in my head. 

Daily Lyme Facts

For Lyme Disease Awareness Month, I plan on posting a fact about Lyme Disease every day.  If you have a certain fact you'd like me to share, please let me know.  Be sure to follow me on Facebook to see all them each day as I post them!

In Memory of Those Who've Passed from Lyme

When I was first diagnosed with Lyme back in 2008, the first thing I did was google if you could die from Lyme Disease.  Everything I read said no.  Of course you shouldn't believe everything you read on the internet.  But when doctors, the people you're suppose to trust with you LIFE tells you, you tend to believe it.  But then those same people turn around and tell you Lyme Disease doesn't even exist.  It's all in our mind.  I know there are many others who have passed who aren't listed.  My heart goes out to everyone whose has passed, their families, and everyone who is suffering.  I know suicide is high among Lymies.  Stay strong.

Join the facebook memorial for Lyme Awareness Month to reflect on a remember those who have passed away due to Lyme Disease.  Lyme Memorial

People Who Died of Lyme Disease:

Michael Cunningham

Jon Pierre Lavallee, 46

Frank John Ferrigno, 48

C. Gordon Smith, 67 Moonface Bear, 35

James Roderick Mason

Kimberly Carol McEachern, 42 

Kathryn H. Brown, 85

Kim Wood, 48

Lynette McKinney, 64

CT Girl, 7 Years Old 

Brett Anthony Paul, 31

Joseph F. Lyons

Freida R. Gaultney

Preston H. Longino

Dr. Basil Roebuck

J. Howard Marshall Jr.

Isabella Radestock

Dr. Carole Alton

Martin F. Dumke

Dr. Sterling Edgar Walton

Sue Ellen Helms, 55

Jodi Lynn Swift, 35

Norman Jenkins Ryker Jr.

Julian B. Backus, 52

Joan Maura Friedenberg, 53

Steve Nelson, 38

George Nijboer 

Dr. Stephen Gumport 

Ann H. McChesney, 58

Clarissa Tilghman Yost, 95

Piet Van Leer, 82

Thomas W. Hughes, 51

JHopkins Autopsy #26488 

JHopkins Autopsy #46758 

Michael Hinsberger, 53

John Miskiv

Jonathan Bleefield

Craig Moon, 46

Florence Desillier

Shelli Grossnickle

Patrick F. Bogdanovich 

Darlene Joyce Deyo, 50

Robert Benton Senior

David Frederick Rosenau, 59

Patricia Bauman, 73

Amanda Schmidt, 11

Glenn Edward Killion, 36

Kevin Ring, 37

David Lee Thomas, 18

Miss Christina Marie Lambeth, 19

Kathy Cavert, 51

Dr. John Drulle

Gayla Diane Keyes, 52

Shirley Forsman

Everett 'Ed' Francis Ives, 53

Lynette McKinney, 64

Beverly Stanton, 53

Rena McNulty

Dr. William 'Bill' Nichols

Brian Pierson, 47

John W. McGrath, 75 

Larry Dolan, 56

Dillon Jamison King, 37

Deiby Ashkenasy, 23

Beth Coen, 46

Richard Robley, 47

Owen Klepper

Simuel L. Danny Hogan 

Elizabeth Burke Laubach Claflin

Kendall Wooten, 22

Ellen Agnes Loughlin, 56

Lori Lynn Widlund, 42

June Atkins, 77

Richard T. Mullin

Travis Wilson, 23

Professor Alasdair Crockett

Ellen Havican Watson, 20

Jesse Jonah Goldsmith Morgan, 35

Dr. Edward Stanley Arnold

Pat Pepper, 58

Gordon P. Grafton, Jr., 46

Dr. Michael G. Linebaugh 

Christopher Peter Thomas, 46

Peter Edgar Hare 

William Henry Boesche, 41

Robert Lee Runion, 77

Chester A. Mellen

Barry Horton, 55

David A. McHoul, 63 

Arlene DeLaurier

Jamie Forschner, 5

Dr. Jane Colfax

Sharon Ann Gross, 41

Joyce Marie Woods, 46

Jenny Umphress, 21

Scott Brazil, 50

David A. Butler, 73

Gilbert Thornton Perkins, 77

Theresa Jean Wells Clay, 45

Timothy Alan Selepec, 46

Catherine Klapak, 44

Dr. John Bleiweiss

Martha Bradley, 68

Gayle R. Hogan, 66

Paul Fjare

Larry Bennett, 50

Michael Wilson

Adam Rowett, 18

Gloria Jean Baglio

William A. ''Bill'' Mattson, 62

Catherine Klapak, 44 

James Sanders, 55

DeWayne Murphy, 34

Mike Thomas, 48

Barry Horton

Robert Michael Hanson, 49

Edwin John Parssinen, 86

Peter Anthony Banducci, 45

Diane Varsi, 54 

Randy Stevens, Jr., 6 minutes 

Stewart H. Dowell, 62

John Thomas Pitner, 28

Rude, Charles Lee, 54

Jerry Balistreri, 51

Stanley V. Piser, 90

James W. Loughran, 63

Doris Grade

Rick Fincham, 44

Ted Paul Richard Hoggard, 21

Terri Dahl Fishel-Hokit, 61

Brian Hirsch, 43

Hilary Skinner, 43 

Dr. Corey Brian Schmidt, 53 

Carlton Tucker, 38 

Kenneth Hagen, 39 

David Cole, 65 

Polly Todd

Richard Holtry 

Bonnie Borntrager 

Dana Hathaway, 51 

Paula Rae Lipkin, 52 

Robert Silverman, 45 

Ronald S. Ferris, 55 

Michele Rose-Clair

Sarah Minor, 44

Helenette Suchocki, 67

Tim Snow, 44 * 

Kevin Smith * 

Watt Carter

Susan Hawkes-Koons, 57

Theresa Nelson, 38 

Terry Allen Wood, 48 

Luther Conant, 51

Carmen Charles Casciani, 64

Alfredo Mathew Jr. , 59 

Ann Vesonder, 46 *

Karen Sullivan, 48 * 

Hartley Everette Jackson, 87 

Chantal Seaman, 62 * 

Donna O'Toole, 35

Katherine Alderson Crowe, 77 

Peter Vyselaar* 

Linda Fuller, 57

George Wendell White Jr. , 83 

John A. Every 

Stephen Dolan, 30 

James Andrew Anderson, 58

Dennis Stephen Johnson, 58

Richard Delano Thoner 

Philip J. LaMonico, 69

Guy Sumner, 66

Thomas Roberts

John Martini

Betty Jo Hemphill, 52

Betty Jo Loubier, 45

Gail V. Fichtl Walling, 49

P. Kevin Missett , 52 

& Elizabeth Graham Missett, 58 

Vickie Crawford, 55

Nina Bonderman Tarnofsky, 80

Balsorah Lamar Savely Miller, 64

Kimberly Ann Cooper, 37

Kathleen E. Schuyler, 52

Harry Hartner, 62

Vincent Sota, 47

Vincent Paletta, 61

Robert J. DiBattisto, 64

Robert J. Hoffman, 48

Jim Sazani, 59

Ginette Ellen Jones, 39

Barry Gordon, 52

Debbie Selberg, 52

David A. Butler, 73

Stacy Lynn Grow, 28 

Marion A. Hastings, 68 

Eleanor J. Kuhar, 81 

Leslie Clifford Kiggins, 77 

John N. Gamble

Benjamin O. Carter, 68

Michael G. Schulte, 69 

Robert J. Thompson, 49 

Stephen A. Herring, 42

Rebecca Rose Boone-Britt, 55

Rebecca Marie Jarrell Nichols, 50

Harry Phillips Sullins, 73

Thomas B. Brown, 83

Logan Kock

Frances X. Bender, 56

Imogene R. Schultz *

Bill Chinnock, 59

Teresa McGilley Redlingshafer, 72

Duane H. Johnson, 65

James Paine Koch

Eric von Schmidt, 75

Shirley E. Wolfenden, 75

Maggie McCorkle

Priscilla Moulton Shafer, 73

Judith Ross Boynton, 54

Deborah O'Connor DeMarco, 40

Raymond J. Krueger, 79

Holly Kulikoski

Richard M. Scott, 86

Donald J. Simpson

Germaine''Gigi'' Chamberlain

Christine M. Rizzo

Joseph Gregory Padner, 48

Lonnie Benedict, 45

Patricia F. Gerstner, 56

Frances L. Jacob, 75

Robert M. Silver 

Michael John Fried, 65

Anna Gorbsky Hladchuk 

Leonard J. Spooner

Paul Butler *

Samuel Butler *

Jane May Chapman, 45

Dr. Edward L. McNeil, 81

Dr. James Alan Yarbrough, 54

Col. Bryce H. Wagner, 62

Britteny Gallgher, 17

Robert Dawson, 55

Shirley Moore, 67

Steve Cheek, 52

Sarah Elizabeth Pawson, 41

Barbara Lynn Fitzmaurice, 56

Robert Chilton

Drusilla Davis Howey, 68

Jacqueline Lewis Hacker, 55

Suzanne Spear Lawrence

Jimmy Duarte, 70

Gustav R. Persson, 62,

Patricia Ann Holloway, 71

Mary Frampton, 76

Shirley E. Wolfenden, 75

Michael Coers, 62

Robert J. Hoffmann, 48

Harry Burke, 82

Rose - Karen Johnson Rose

Bruno C. Malvezzi, 87

Robert Earl Wicker, 56

Steven F. Wells, 45

Sheldon Willis "Tex" Stout II, 66

Joseph Vocino 

Lloyd Ebert, 101

Emily Powell, 15

Gregory Joseph Deneault, 45

Arda Manoukian, 50

Susan Starchuk, 62

Michael "Mike" Wilnau, 53

Lothar Bachmann, 65

John Douglas Powell, 64

Gianetto, Joseph F. 

Charlene L. Kaijala, 52

Mike Gregory, 43

Russell Paul Reach, 49,

Harry E. Waechter

Buck R Benoist , 66

For more information and obituaries of these beautiful people, please visit...

http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html